A Patient Advocate for an Adult Daughter with ME/CFS Addresses Dr. John Coffin's Pain
By Lilly Meehan
Dear Dr. Coffin,
I was sitting near you at the NIH State of Knowledge Workshop when you said that the patients’ online comments about you were “painful.” As the mother of a 25-year-old young woman who has been fully disabled with ME/CFS for ten years, and affected since childhood, I would like to tell you a little bit about “painful.”
“Painful” is being six years old and realizing there is something wrong with you because you cannot keep up with the other kids in a game of tag and are always “it” because you can’t run fast enough.
“Painful” is being fifteen years old and having ME/CFS hit you so hard you cannot get out of bed, go to school or do anything besides sleep.
“Painful” is hearing your doctor say to your mother, “If she were my daughter, I’d get her to go to school.”
“Painful” is migraines and severe fibromyalgia nearly every day.
“Painful” is trying to keep up with your studies, missing school, getting farther and farther behind, and realizing there is no way to be in school at all, despite trying desperately to hang on to your life as a high-achieving high-school student.
“Painful” is finally being forced to drop out of school because you’re just too sick.
“Painful” is the day your classmates graduate from high school and you’re not there.
“Painful” is being dismissed by doctors from Santa Barbara to San Diego who either don’t recognize a clear case of ME/CFS sitting right in front of them or don’t have any idea how to help.
“Painful” is when your friends go off to college and graduate and you do not go, nor are you well enough to even attend their graduations.
"Painful" is realizing the medical community doesn’t care much about your illness, and the government isn’t funding any research to help you.
“Painful” is when your friends get jobs and have lives and don’t seem to have much in common with you anymore, and then slowly drift away.
“Painful” is the day your sister gets married and you can barely keep up with the festivities, and you know this day is not coming for you.
“Painful” is being an adult and having to depend on your mother to do your dishes, wash your clothes, do your grocery shopping, run your errands, bring you food and give you the only emotional support you get from anyone.
“Painful” is accepting Section 8 housing benefits and Supplemental Security Income benefits, which are $700 per year below the poverty level, when you’d prefer to be paying taxes and being a contributing member of society.
“Painful” is seeing little future ahead of you unless this illness gets more funding and a treatment and/or cure is found.
“Painful” is wondering what’s going to happen to you when your parents die and can no longer pay for your needs or be your caregivers.
This kind of daily pain is why the patients are upset, Dr. Coffin. We know you’re an experienced scientist and have done many important things in your career. We don’t think you necessarily know the depth of suffering that is going on out here in the real world of ME/CFS. It is hard to feel sorry for you when we deal with these harsh realities and struggle daily.
I think you need to see the reality of this dreadful situation and realize the pain you feel about online comments about you is less important than the profoundly disrupted life that most with this illness endure day in and day out, for many years. Perhaps you should put on your big boy pants and just cope. It seems to me to be a much easier task for you than for us.
Lilly Meehan and her daughter live in Ventura, California.
.jpg){kind=small}
When he said painful I did not interpret it as it hurt his feelings. Rather that it was painful to try and read through some of the postings online because the statements were so inaccurate and so far from the truth. I find it painful to try and read through some of statements about XMRV because the crazy conspiracy theories. They do not hurt my feeling but rather hurt my brain to ration with the irrational.
ReplyDeleteWhat a wonderfully written post - and moving. I am so terrified that my daughter will end up with this as well. She is only 4 now, but I know it can strike at any time. As much as I suffer through my daily existence, I can not fathom having to watch my daughter go through what I have been through. We need research NOW.
ReplyDeleteDr. Coffin - this isn't about YOU. You need to get over yourself and look @ the larger picture.
Put your big boy pants on, and "leave your ego behind", not XMRV dear Coffin.
ReplyDeleteI've had mecfs for nearly 15 years. I can relate. I found coffins' position surprising. To say no more research into xmrv for mecfs is strange to say the least. Like he's been turned. Hmm. I used to think he was good :s
ReplyDeleteBravo Lilly! I wish I could have met you there. Too much going on to keep up (with the mush I have for a brain).
ReplyDeleteCoffin won't get any sympathy from me. On the contrary, I believe they are stalling. Some in the govt have covered this up since day one. Maybe our cries will be heard with Judy in our corner.
Thank you Mindy for posting!
The conspiracy theories, distrust and attacks is becoming tiring to me as well. What I see is group of scientists giving the due attention to this debilitating illness ... And in return some in patient community constantly attacking anyone that disagrees with "XMRV" link.
ReplyDeleteI am a patient, for more than 10yrs, disabled and home bound.... also attacked when I voiced my opinion that did not agree with groups view.
I maintain an open view, XMRV may or may not be the answer, but I don't want all focus to be placed on at the expense of other research findings until proven.
Mindy,
ReplyDeleteThank you for posting this message from Lilly. I totally agree with carlitos in that Dr. Coffin needs to put his big boy pants on (or better yet, grow a set) and deal with reality.
HELP instead of hindering. If you know how one or more replication competent retroviruses have been created and most likely been spread, then be a man and share your knowledge. The claim of "contamination" requires your due diligence to prevent the spread.
We are watching and will act. ~ JT
As the mother of a daughter sick for 15 years who never had children or married because of this illness, the list could go on and on. I just can't tell you how much pain there is.
ReplyDeleteThank you Mindy.
Dear Anonymous #1,
ReplyDeleteI was sitting about eight feet away from the podium. I could see and hear very well. Dr. Coffin was indeed talking about his own hurt feelings.
Thank you, Lilly, for this clear explanation, and thank you, Mindy, for printing Mindy's post.
ReplyDeletePatricia Carter
Why don't people see what they are doing with there personal attacks on researchers? Dr. Coffin was very excited in the beginning about the prospects of XMRV and gave a very positive editorial the Science paper.
ReplyDeleteThe more people attack him the more it drives him to disprove XMRV. If people reached out to him after he did not find XMRV then maybe he would either try a different approach to find XMRV or move on. But now you have even Dr. Mikovits attacking him and I bet he is personally invested in trying to prove he is right.
I think Dr. Mikovits shares some blame in the reason not many researchers are finding XMRV, she needs to reach out to researchers not finding XMRV and show them how to test for it, not attack them.
I am so deflated after all this. Why say that coffin? After all the attempts for funding we finally get a chance to be heard on the NIH campus and you screw us. You and the CAA should be ashamed.
ReplyDeleteI was in the room as well when he said this. It was definitely an attempt to convey that his personal feelings were hurt at the angry emails and blogs. I believe this is a continuation of the personal side of the UK media blitz that started with Myra McClure shrinking like a fragile flower that people would be so cruel to her through mass emails. This was followed by Stoye attempting the same thing at the FDA BPAC meeting, although less effectively. His deteriorated into rambling on about "These ME patients aren't happy no matter what we do. There's no pleasing them. We banned ME patients from giving blood and they still aren't happy with how we did it or why." He held his hand up in the air with an incredulous look like, poor us. We just can't win no matter how kind we are. Given Coffin is Stoye's mentor and partner in crime, it makes sense he would now try this same tactic. It didn't come off well. Seemed forced and insincere. Even IF sincere, we don't have patience for it. Suck it up Coffin and answer the questions. Why is there an antibody response and what would be responsible for a far lower amount of control with X/PMRV than patients? You have never directly addressed either of these within the science literature or when speaking.
ReplyDeleteHeidi Bauer
This could have been written about me, except I am now 35, not 25. It's really too much for just one person to go through this pain, how many millions are there just like me? Or perhaps more importantly, how many more will be allowed to go through this because of the neglect? I know there are children and teenagers out there now who are just starting out on the same journey to hell that I have already been through. Over the last 5 years my condition has got worse, and it continues to do so, I estimate I only have a few more years left during which I will be able to campaign, but I intend to fight as much as possible for as long as possible.
ReplyDelete"Anonymous", you said: "I maintain an open view, XMRV may or may not be the answer, but I don't want all focus to be placed on at the expense of other research findings until proven. "
ReplyDeleteAnd I tell you, NO PUBLIC FUND whatsoever are being used at this moment on XMRV Research, only PRIVATE FUNDS. Meanwhile Millions of $ of Public funding goes to psychogenic research or "other kind of research". So your observation is "out of place" the focus at this time is to "leave XMRV behind" or "to dissprove XMRV findings", and not to further investigate the role of XMRV.
Researchers like Coffin are publishing studies elaborated to disprove XMRV or to "try to prove" it is contamination. That does not add anything to Science. If instead they tried to look for immune signature or what XMRV does in the immune system, that would add to Science, and to us.
To me XMRV/MLV is the most clear plausible missing link to solve CFS, and if it was my money, I would bet research expenditure on digging deeper on it, and not so much on contamination theories.
Dear Lilly, thank you for this. you could be describing my daughters life. she became completely disabled at age 16, she is now 33. I was diagnosed at the same time, and have been unable to work. my husband is now showing symptoms also. neither my husband or daughter has health care. we are hoping that soon a cause and treatment are found.
ReplyDeletethank you again. phyllis
I agree Lily~ he WAS indeed talking about his own hurt feeling... with absolutely NO consideration about the 20+ years OUR feelings have been hurt by being told that "IAIYH" by any Dr. that we see for care, as also verified by the ends that the MDs actions have led some patients to..
ReplyDeleteI don't see Dr Coffin So HURT that he will commit suicide AND he hasn't been getting attacked for 20 yrs YET> I agree, take off your nickers and put your Big Boy pants on..
Dr. Judy and Elaine DeFreitas have "already" been subjected to more than you could even consider being on the receiving end of..
You think because you whine we are NOW going to just believe your incorrect wrong strain used "contamination theory" ? Sorry, we grew antibodies to XMRV "the long hard way"~ we have been very sick for a long time + Many co-infections like Dr Judy said> No one has Still said "WHY by Those criteria ALONE" we don't qualify for some INSTANT Meds, if not ARVs then at least Immune Modulators..
"Dr Coffin, I personally do NOT think you have a clue" HOW many of us there ARE out here that are bedridden because we can not even get the Ampligen like Mary, Pat and Robert were able to, so they could be BRAVE and "Be Our Voices" and even get there Just to Speak to you all ON OUR BEHALF.
Better "Get ON with it" Dr Coffin AND "Research XMRV MORE" not Less, as That IS what we are testing Positive for and/or already have grown Anitbodies for WAY Before you had your 1992 theory..... if you have an extra stash of cash then go ahead and study something else..but not at the Expense of OUR Lives ~ PLEASE.
Where there IS smoke there IS Fire... and Thousands by many different labs in different countries ARE testing Positive for XMRV and NOT by the strain YOU were using.. so Please pull out your Hankie and Wake UP ! We've been sucking it up for 20+ years and you have been ignoring us....UNTIL NOW> and now you want to divert research from The ONE thing we ARE testing Positive for~ huh ? Why does something smell here ?
Oh I get it, he is the one that is NOT willing to Get Rid of the Old Theories.. as in the Solomon Story that Alter quoted: Coffin wants to cut us in Half. Sorry Dr Coffin~ you and the "ole Boys" already shot down Dr DeFreitas 20 years ago and did not care about HER feelings or career... Now it's your turn to be on the WRONG side of History and Research.. The PRC's will NOT get the job done "right now,"~ Use the proper strain and Grow up and show you have some HONOR, instead of a Bruised EGO... or you will be ordering your own Nails. Robert's tears carried MUCH more weight than your whining~
Awwwwwww, we're sorry his feelings were hurt. After all the hurtful things said to us by doctors, he can just grow a thicker skin and deal with it, as we "emotionally fragile" women who "can't deal with stress" have done.
ReplyDelete77% of patients report a bad interaction with at least one doctor.
ReplyDelete"They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD." - Nancy Klimas, M.D., Miami Herald, March 24, 2009
And this big sissy whines because he has to hear what we hear every day. Pooooooor baby!
For a reason known only to Blogger, two comments on this post won't publish on the site, so I copied and pasted them.
ReplyDeleteThis is a comment from Nina:
Thank you, Lilly. Those were my thoughts exactly when I listened to John Coffin. If he wants to know what painful means, why doesn't he sit beside some patients' beds and listens? Does he even know what impact his words have on the lives of thousands?
His comments and behaviour are in stark contrast to Dr. Alter, who is still open-minded in regards to XMRV, but has long realized that this is not about XMRV, it is about a group of neglected patients who very obviously have a viral illness. If it's not XMRV, then what is it? Dr. Alter wants to find out. Dr. Coffin just wants to be right.
This is from Anonymous:
Dr Coffin's comments reminded me of Tony Hayward - former Chief Executive of BP - who, following the deaths of the men on the drilling rig in the Gulf of Mexico and the subsequent catastrophic oil spill, remarked "Nobody wants this over with more than me. I'd like my life back."
http://www.youtube.com/watch?v=yqazSnR8dfI
Grow a pair Dr. Coffin and do your job with integrity! Over 27 yrs for me now, and having to try and raise a family. As tired as I am, Im calling you out, 3 rounds-may the best man win!
ReplyDeleteA powerful letter Lilly - I take it you sent it to him - and thank you Mindy for posting.
ReplyDeleteI don't have the internet signal strength to be able to watch webcasts and videos, but when I heard of that comment, I thought,
"Dr. Coffin - welcome to our world! How would you like to read online in pseudo-scientific paper after paper, that you are imagining his symptoms because of your faulty illness beliefs, that you are ill most probably because you were abused as a child (which most of us, thankfully were not) or because you have a defective personality,or because you have become "stuck" in your illness and your brain simply needs retraining to think positively ... ouch!"
I'm sure no-one doubts that labs can be contaminated but have you proved that the results found by the Lombardi and Lo/Alter and other teams fining XMRV are a result of contamination?
No? Then how unscientific, not to mention unprofessional of you, to state categorically that XMRV research should be abandoned outright.
Anonymous above says XMRV may not be the answer - that is true - but we will never find that out if this important research is abandoned at this stage. Anon speaks of other research - what might that be - yet more psychobabble, because biomedical ME/CFS research is certainly not being publicly-funded and has not been for decades.
XMRV research has been the catalyst for recent interest from scientists of the calibre of Dr. Alter taking an interest in this cruel disease. Definitive answers have not yet been found - we must let the scientific process run its course.
I have great faith in Whittemore Peterson Institute as a non-profit organisation with a mission to find cure(s) for neuro-immune disease, because the founders' daughter has myalgic encephalomyelitis. If XMRV is found not be implicated in ME/CFS, I trust that they will turn their attention to other causes.
We know, and have known for decades,that ME/CFS is a post-viral disease. Many viruses have been associated with it. It is high time we established why these viruses can have such a profound and chronic effect on the body and whether early treatment with anti-virals would assist recovery.
Thanks again, Lilly and Mindy and best wishes to your daughter Lilly and to all children and young people out there with ME/CFS.
Lilly,
ReplyDeleteThank you. My thoughts exactly.
I'd also like to acknowledge the courage of Dr. Fred Freidman for speaking the truth. Shame on Dr. Mangan for trying to silence him.
It was quite ironic that several speakers talked of the need for educating more primary care doctors while the University of Medicine and Dentistry of New Jersey prosecutes someone like Dr. Friedman for trying to help ME/CFS patients while also refusing to allow students to accept scholarships if that means suggesting anything to future doctors about the reality of ME/CFS - that it is not a psychological disorder. It is the UMDNJ that ought to be prosecuted.
Dr. Coffin, this is not about you!
I appreciate that CFS patients have strong opinions and many are really pissed off (in between bouts of self-pity, you might ask yourself why they're so angry).
Stop whining and stop with the "legions of CFS patients are on ARV's and they must be stopped" soapbox. At most there are probably a dozen. You've had a fine career but you're losing your objectivity and credibility. And we need objective and credible scientists.
I'm not really sure what it takes (a lot of balls?) to come to a CFS conference and talk about how much you've been wronged.
Brilliant letter, Lilly.
ReplyDeleteYeah - other research, whats that then! None in the UK funded by MRC. None in the US either.
Every time I hear 'well, I'm fed up with the conspiracy theorists' it really winds me up - no conspiring is required to keep this disease under wraps - they just ignore us isn't that bad enough and then when privately funded research finds a likely answer they want stall, stall stall.
Anonymous at April 11, 2011 12:35 AM said
ReplyDelete"I think Dr. Mikovits shares some blame in the reason not many researchers are finding XMRV, she needs to reach out to researchers not finding XMRV and show them how to test for it, not attack them."
Dr M has been going round the world showing anyone who will listen how to test for this virus.
Shame on the callous Anonymous first and sixth commenters. (April 10, 2011 6:23 PM and 8:38 PM respectively)
ReplyDeleteDo you laugh at the suffering of others too, or are inappropriately-timed sarcastic barbs pleasure enough for you?
There are no conspiracy theories or irrational rants in Lilly's heartfelt post, just a mother's and daughter's pain, speaking for us all.
You are both a disgrace. Go crawl back under your rocks.
Can't we just accept that Dr Coffin finds some of the comments on ME forums hurtful? I would, if I were him. Talking about his own pain doesn't deny ours.
ReplyDeleteAs far as I can see (after 30 years of watching the research), most ME researchers are genuinely trying to do their best. (That's not to say that some have vested interests in psychologising this illness.) The personal attacks some researchers suffer are appalling and we know that these attacks lead to some very able people quitting ME research for good. How does this help?
I just can't follow the logic in this post. Coffin describes some online comments as being painful, and this is used as an opening to attack him? That with this one innocuous comment, Coffin is somehow placing more emphasis on his own hurt feelings than the suffering of the patient community? Ridiculous and unfair.
ReplyDeleteAs for 'Perhaps you should put on your big boy pants and just cope', how about showing a bit of civility to a respected scientist. You really think this helps us?
We all want XMRV to work out, but that doesn't mean that every scientist with an opposing view is the enemy. Nor should they be treated this way.
Dear Anon, Coffin's comments were not spoken to a friend over coffee or in a private email. They were spoken in an official capacity at an important meeting that was being filmed and webcast. Anyone making public protest of that nature in that setting has got to expect a public response. It reminded me of the BP executive who complained about wanting his life back after the oil rig explosion and spill. It was an outrageous thing to say. It was like the owner of a beach house in Malibu complaining of beach erosion to a tsunami victim in Japan. My comments stand.
ReplyDeleteI'm surprised not more researchers who are being villified for not finding XMRV are saying how they feel.
ReplyDeleteDr. Alter could have talked about his feelings, and I am certain that Dr. Mikovits must be feeling put upon as well. To me, the difference was that everyone else at the conference was presenting published data, but that rule did not apply to Dr. Coffin. He was free to make assertions, as though his was the only opinion that mattered. And to make a joke "I promised not to talk about antibodies" as though it was a laughing matter. Indeed, a follow up question might be to ask him to whom he made that promise...
ReplyDeleteYes, I've seen the webcast and I'm incredulous that anyone could find it offensive. It's up on youtube, perhaps people should hop over and judge for themselves.
ReplyDeleteWhat his speech should be doing is helping to placate the patient community. Reassuring us that their work was diligent and honest, even if it wasn't what we wanted to hear. Coffin talks about being excited to work with XMRV. The excitement to apply decades of expertise to helping patients. He states that their one goal was to get it right and they believe that's what they've done. That they have not been influenced by their employers, career prospects or
commercial interests. And yes, he states that comments to the contrary are deeply inaccurate
and painful. Something you strangely find so awful and the single point from his speech worthy of focusing on. What I saw was nothing more than an candid moment of honesty. I wonder, if this had come from Judy's lips, someone who's also received some quite critical and unfair web commentary, whether she would have been the recipient of a bizarre and disrespectful 'you need to toughen up' style letter. No?
What I do think is outrageous is making a likeness between Coffin's comments and those of BP's former chief executive. Tony Haywards self pity came at a period when BP had caused one of the worst natural disasters of all time, simply because they were trying to save money by cutting corners. What exactly has Coffin done to draw such a distasteful comparison? What has he done to become the bad guy? He's a gifted scientist who's devoted his valuable time and expertise to unravelling the mysteries of XMRV. Whether right or wrong with the contamination theory, he shouldn't be driven away with this sort of pettiness. He has the kind of mind we need looking for answers.
Beautifully written Lilly, and thankyou Mindy for posting.
ReplyDeleteI think that this latest comment by Dr Coffin was simply the 'straw that broke the camels back'. He has been missing the point and sounding less than sympathetic for quite a while now. I actually am sorry that he feels hurt. However, to bring it up At SOK as he did, in a room full of patients and longterm ME/CFS researchers and advocates certainly wasn't the most tactful of moves. In comparison to all the pain and suffering that patients go through every day it certainly appears petty.
ME/CFS is a far bigger disaster than the BP oil spill. In fact, it’s a holocaust, with 17 million people worldwide suffering from the disease. Many ME/CFS patients have been sick for decades, some have died, and many others are dying.
ReplyDeleteGiven the seriousness of this disease, given that there’s not even one approved medication to treat it, given that the Judy Mikovits study, the Lo/Alter study, the Silverman/Klein and the Ila Singh studies have shown XMRV or related retroviruses in ME/CFS patients and prostate cancer patients, given that Lo/Alter found XMRV related retroviruses in blood donors (signaling contamination of the blood supply), given that some laboratory workers working with XMRV are now testing positive for the retrovirus, it’s understandable that some researchers, patients and their advocates find it problematic that John Coffin sees “the next step as leaving the virus we know as XMRV behind.”
I agree Mindy, and I think it's far too early for anyone to discount XMRV. Too much conflicting data and not enough firm answers yet.
ReplyDeleteBut I can't see how going on the attack over such an irrelevance is in any way useful to us. What matters right now is the science and the desire to find the truth. We as patients and onlookers can help the process by being critical of all the information that comes to us, in an impartial way as we can manage. And importantly, put pressure on those making the decisions to exhaustively research XMRV, so whatever the outcome, we're left with the truth.
All this letter seemed concerned with was slapping Coffin on the wrist for having the audacity to use the word painful to describe commentary he felt was deeply inaccurate. Ridiculous isn't it? And i'll make the point again, if Judy had used the same words, I suspect she'd have garnered support from the same people happy to bash Coffin. After seeing some of the unfair things written about her she'd certainly have had mine.
So attack the science. Attack the willingness to give up on XMRV when there's still so much confusion. But let's not resort to this unfair and rude pettiness.
Yes, 'unfair and rude pettiness' it is!
ReplyDeleteAnonymous (who ever you are),
ReplyDeleteIt is my impression that a large measure of the issue here is about perspective and tone.
A number of Coffin's recent remarks lack perspective. He could have easily gone the route of Dr. Alter and said that there is still a lot to learn. He's consistently taken a paternalistic tone (the next step is to stop pursuing this silly notion that XMRV is involved; patients need to stop taking ARV's; I'm right, I know all that is needed and that's that), one which seems to show no appreciation of the reality that ME/CFS patients endure everyday.
He has every right, even an obligation, to share his concerns or doubts but Coffin goes a step beyond that and seems miffed that his is not the last word on these topics.
We've all dealt far too long with this sort of paternalism from a large majority of the medical and science communities and I doubt that there is a less productive way in which to approach this community.
I do hope that he's not above learning a bit about having a conversation, not just delivering edicts.
That's an interesting point Shane. But the unwavering conviction in one's belief and the attitude and actions that spawn from them, which you describe as paternalism, could be just as fairly be directed at the WPI (convinced that XMRV is a human retrovirus with unknown pathogenic potential; clinical trials are needed now). And aren't we all taking solace in the fact that the WPI are so focused, steadfast in their beliefs, ready to put forward how we should proceed, despite the knocks they've taken?
ReplyDeleteSo I'm not sure how useful it is to get into subjective matters like this. It feels like more of a time to be examining of the science than perspective and tone.
Anonymous (it would really help if you would pick a name, any name besides just anonymous),
ReplyDeleteCoffin takes paternalism (CFS patients shouldn't use ARVs) into the realm of unsubstantiated bad science (we should stop research on disease association with XMRV).
The first seems to be borne out of a lack of familiarity with (perhaps even bias against) this disease (I'm not in a position to say that the risks aren't worth it to some patients and neither is he - although he may think he is). The second is a more serious offense in that there are many good arguments the research into XMRV/MLVs ought to continue. For one, the macaque studies that detect XMRV in the blood as well as an anti viral response that practically disappears within weeks but when the animals are sacrificed there's XMRv in many of the organs. For this reason, I don't think that any study looking solely at the blood ought to be the last word on XMRV/MLVs, including the Lipkin or Singh studies.
Coffin got a reaction from a lot of CFS patients because he "attacked" the WPI.
I said nothing about the WPI. I've said on many occasions that rightly or wrongly, nothing that the WPI does or says will make a difference until their work is replicated by an outside, unassociated group.
Coffin got a reaction from me because his statements were bad science and to top it off he was being a dick about it at a major NIH/CFS conference and that has the potential to stifle good science from which I might benefit. However, because Alter to put things into the proper perspective, I think Coffin just came off as being an over sensitive boob (albeit with an impressive resume) promoting an agenda, and as having overstated his case (again, not good science).
Unsubstantiated bad science? Let's continue to hope so, but some patients seem not to want to acknowledge that Coffin argues a strong case for XMRV being a lab contaminant, and if correct then focusing attention elsewhere is the logical next step. There is nothing particularly outlandish or irrational in this at all. And who wants patients possibly subjecting themselves to ARVs because of false beliefs concerning a lab contaminant.
ReplyDeleteI thought it interesting what Alter was reported to have said, in that 'XMRV has been and continues to be the most confusing research topic he has ever worked on'. It really signals the fact that both sides are making legitimate claims, yet it's far too early too early to be drawing conclusions. There's still much work to be done.
How did Coffin 'attack' the WPI?
"...yet it's far too early too early to be drawing conclusions. There's still much work to be done."
ReplyDeleteAnd you don't see your own statement as inconsistent or at odds with Coffin stating that we ought to be done with XMRV? Yes, a premature unscientific rush to judgment (in either direction) is bad science.
As for ARV's, you're assuming false beliefs (a premature conclusion unless you know something the rest of the world doesn't) when all I am willing to assume is severely ill people with no other options being offered to them. ARV's could be the entirely wrong thing to do and for more reasons that just the absence of a retrovirus. Even if retrovirus is causative, it's possible that even our best guess with today's meds could make things worse but I am not going to assume that anyone taking that risk is simply ignorant of that possibility.
I don't know how sick someone is and each of us gets to factor that into our own risk/benefit ratio.
Anything else you'd like to have picked apart? You're starting to adopt the same paternalistic tone that is so unattractive in Dr. Coffin.
One last comment, the whole "saving ME/CFS patients from themselves" shtick is getting old and it comes off as insincere as well as ignorant.
ReplyDeleteHelp or get the hell out of the way!
'....a premature unscientific rush to judgment (in either direction) is bad science.'
ReplyDeleteOf course, but Coffin has spent the time applying his considerable talent to XMRV before sharing his views. It would certainly take someone of substantial expertise within retrovirology to start throwing any such accusation his way.
What I want to see is a consensus within his peers, as my scientific background doesn't enable me to accurately judge the claims. And this is why I can respect Coffin's viewpoint, accept it as a possibility, but believe it too early to declare the game over.
'As for ARV's, you're assuming false beliefs...'.
I'm assuming nothing as I'm sitting firmly on the fence concerning XMRV or the use of ARVs. You must have misunderstood. My point was that it's logical for anyone who believes XMRV to be a lab contaminant, as does Coffin, to also believe that taking ARVs is inappropriate. If he stated this, as you mentioned in your 'paternalistic tone' bit, then I don't see a problem.
'Anything else you'd like to have picked apart?'
No, but I'm interested to know how Coffin 'attacked' the WPI, which I asked about before. It may explain some of the sentiment.
"One last comment, the whole "saving ME/CFS patients from themselves" shtick is getting old and it comes off as insincere as well as ignorant"
When did this happen?
45% of the hiv virus envelope is the nail in my coffin...i cannot see what his fuss is all about...meanwhile patients continue to die and nothing is 'really' done by these so called scientists...he thinks he has problems, wait until he falls sick with this monster, 'that will be the nail in his coffin to deal with'...they better all pray i never get well because i will take on a new complete name...'hurricane walsh' and i will be making the rounds for all the unjustice done...has anyone seen 'walking tall' movies...like arnold said 'i will be back' sincerely aidan walsh southampton, ununited in the kingdom....mark my words 'i will be back' p.s. i cannot wait to enter back into the boxing club full-time, i will break all the bags....
ReplyDeleteIt's is good to read others comments and not to feel so all alone. I had mono over 10 years ago and have fought CFS since then. My doctor first sent me to see a psychiatrist but I knew I wasn't depressed, I just felt terrible. I still fight this. My doctor tells me not to get stressed. My mother died a few months ago, I fell off a horse and fractured my neck badly, my brother is going to federal prison, I lost my job, I am losing my health insurance, lost two dogs and a horse in the last few weeks, and now I sleep 16 hours a day. I can't get anything done, and hope no one thinks I'm being lazy. My sister swears on Standard Process Dramamine, but it only helps me a little. I'm on Lipitor and my legs kill me at night. Sleeping pills don't seem to work for me. Now I just pray for help. Thanks for listening (reading) because I feel a little better right now. Best wishes to everyone who fights this condition.
ReplyDelete